When Amy Webb, 40, a blogger and artist from Cincinnati, Ohio first found out the baby girl she was carrying would be born with defects that would affect her limbs, including her hands, her first concern was how difficult life may be.
“I’m an artist, I play the guitar,” Webb explains. “I thought, ‘I do everything with my hands, how will I navigate having this child without hands?'”
Webb would come to find out that her daughter would lead the way in showing her how to navigate life with different limbs.
Webb, who is known as “Miggy” from her writings online, runs the blog This Little Miggy Stayed Home. There, she chronicles life with her husband, Bracken, a pediatric dentist, and their three children, known online as PSP, 11, Lamp, 7, and Zuzu, 3. Her daughter, Lamp, was born with microgastria and limb reduction complex, a condition that affects her stomach and all four of her limbs.
As Miggy describes it, her daughter was born with some limb differences but also “with extra awesome.”
Preparing to meet her daughter for the first time forced Miggy and her husband to come face-to-face with, as she puts it, preconceptions about disabilities that she didn’t even realize she had. Common parenting sentiments, such as “counting your baby’s fingers and toes” suddenly took on a different meaning for the parents as they navigated this new journey. The moment Miggy saw Lamp, however, any trace of fear was washed away.
“She was perfect and she’s our baby and she’s exactly who she’s meant to be,” she recounts.
As Miggy watched her baby girl grow, she realized that Lamp, whom she says was a “delightful baby” with a sweet and calm temperament, did not experience the frustration Miggy initially feared she would once she realized her limbs were different. To Lamp, her limbs are just hers and although she may have moments of wishing she could run and jump like some other children, overall, she’s just fine with being exactly who she is.
“She has said, ‘I’m glad God made me the way he did, I like being me,'” her mother tells Babble.
Today, Lamp is an energetic and curious 7-year-old, who primarily uses her feet for her fine motor skills (although she uses a special fork her father made so she can eat with her hands), navigates through school in her power chair, and scoots around the house when she wants to.
As the parent of a daughter with medical needs, Miggy has used her blog and Instagram account to put a spotlight on limb differences and disabilities in general. She says that even years after Lamp was born, she struggled with “flipping the script” on disability and disability awareness. Through her blog and her series Special Needs Spotlight, Miggy has been able to hear directly from other individuals with disabilities to bring into light to what it means to be disabled.
“There’s still a lot we do to hide our disabled individuals,” Miggy notes. “We’re only allowed to see them as objects of pity or inspiration.”
She points out that some of the language able-bodied people use can send the wrong message. Describing her daughter in terms of how she “overcame” her disability, for example, can be harmful. Because, as Miggy notes, “My daughter isn’t doing anything but being herself.” She says that along the way, she has learned to take guidance from her daughter — instead of the other way around.
“A child with limb differences leads the way for how they are going to use their body,” she explains. “So you have to be open to that and not force them to do what you think they should do.”
Everyday life can present many challenges for individuals with a disability. For Lamp and her family, even a simple trip to the park can turn into a spectacle. Miggy notes that while her daughter is incredibly patient overall, it can be very difficult when every public outing means bracing themselves for the inevitable stares, whispers, and panicked reactions from parents whose children will point and stare.
Miggy does her best to answer questions about Lamp patiently — even on the days when she wishes her daughter could just play freely. She encourages parents whose children may encounter peers who are different to utilize a four-step approach to discussing disabilities: understand that questions are OK, encourage kindness, find common ground, and emphasize strengths of the differently-abled. (For instance, Lamp can write with her feet — how cool is that?)
For Miggy, having Lamp has taken their family on what she calls a journey from fear to love and opened their eyes to the true definition of ability.
“Physical ability doesn’t mean your kids is ‘healthy’ or a good person,” she says. “When it comes down to it, every person is a gamble and we love them anyway.”